26 June 2014

Turia Pitt is one of the most important people to feature on the cover of a magazine. I can't think of a person with a facial difference to feature so prominently in mainstream media in my lifetime. Turia Pitt is a burns survivor and she's pictured in her natural and beautiful state - not retouched - on the cover of this month's Australian Women's Weekly. I've given up on buying women's magazines, but today I will be buying this one.

Magazine covers are reserved for idealised versions of beauty. Faces without freckles or laugh lines. Perfectly straight teeth. Taut foreheads. Even supermodels are airbrushed. It's a big deal for a woman of colour or larger than a size 10 to be featured. Physical beauty seems to be everything.

Her life - and appearance - changed dramatically when at 24 years old, she was burnt. She spent 864 days in hospital, had over 100 surgeries, her fingers were amputated and she's undergone rigorous rehabilitation to learn to walk again.

Three years after her accident, Turia says she's the "luckiest girl alive". She's certainly tenacious. She's an ultra marathon champion - recently riding from Sydney to Uluru and tackling a section of The Great Wall of China to raise funds for Interplast, the reconstructive charity she's affiliated with. She's also studying for a Masters of Engineering. And earlier this year she was the NSW finalist in the Australian of the Year awards. She's got a loving partner, Michael. Talk about superwoman! She has achieved so much.

"Being on the cover of The Australian Women's Weekly is a huge honour," says Turia. "I feel very humbled."

"For me, it sends the message that confidence equals beauty. There are a lot of women out there who are so beautiful but don’t have the confidence, and that's what gets you over the line."

I asked Helen McCabe, AWW's editor, about the importance of Turia on the cover.

She tweeted: "I am snowed under... But the reaction is a bit overwhelming today!". She confirmed the reaction was positive. "It is fantastic", she said.

I tweeted back: "I agree! it's so good to see appearance diversity on the cover of a women's mag. As someone who looks different, I thank you."

And that's the truth. I am so thankful to Helen and Turia for giving women with facial differences hope that we can make the mainstream media, without alteration to our appearance. Turia's scars are visible, the texture of her face has not been altered, and her hand - minus some fingers - is not hidden. She's beautiful.

When I was at high school, I made a comment that I wanted to enter Dolly's Model of the Year. It was the kind of comment said with the seriousness of a 15 year old, heady on Impulse and the naive desire that people are only valued on physical beauty. I wanted to be in Dolly with Miranda and Apia and Shannon - those young models I grew up with. Another student told me that if I did enter, I'd have to change my appearance, put make up on and make sure my photos were in black and white. I guess her harshness was the reality though. I just wouldn't fit the norm that people are used to.

Turia's cover photo gives me hope. Young, impressionable women will see that beauty comes in all forms, beauty is strength and recovery, and that magazine covers don't have to be photoshopped.

Her story and achievements also show that life can go on to be extraordinary, even after acquiring a disability. I love that her story isn't just about her appearance. My friend and colleague James Partridge, CEO of Changing Faces (and burns survivor) tweeted "Great to see that Australia's biggest selling magazine @WomensWeeklyMag is marking Turia Pitt's achievements".

James also said

"I was delighted to see the achievements of Turia Pitt so deservedly recognised in her invitation to join the Women of the Future judging panel of The Australian Women's Weekly - and we can see why she was chosen to be on the cover of this month’s magazine. It’s because of her confidence and her success as a mining engineer, fund-raiser extraordinaire and inspiration to many – and we salute her here at Changing Faces because she is proving that people with facial burns or other unusual facial features do and can achieve those lifetime goals.

"And we also know that her appearance on the front cover of a very popular magazine will challenge public perceptions – I was delighted to see that the magazine favourited my tweet because it is promoting what we call ‘face equality’. No longer should people with facial burns like Turia be subjected to stereotyping, prejudice of discrimination but be treated with respect and equality.

I want people to get used to facial difference. I want them to see appearance diversity everywhere. I don't want people to be scared and look away from someone who looks different. I want people to see facial difference as successful rather than a perceived failure. I want the media to play more of a positive part in changing the way people perceive beauty.

Turia Pitt's cover is a game changer. The AWW'smonthly readershipis 2.4 million (magazines), and its website receives 21 million hits a month. All those people are going to see a different kind of beauty than they're used to!

The media needs to take a positive risk of inclusion. Young girls and women (and males) everywhere need to see that facial difference can be celebrated. This is exciting!

23 June 2014

The memories I've made with my boy (FIANCÉ!) are ones I will treasure for life. While he's certainly got an eye for jewellery (did you see my engagement ring?!) and I have some special silver pieces to remind me of our love, it's the things we do together that are more special.

It's the little things. And it's apt that Keith Urban's Making Memories of Us is one of our favourite songs.

We spend lots of nights in - we even found fun reading the new washing machine manual!

We sing badly in the car - sometimes other drivers glance over! We can just be ourselves - and this is nice.

He sets his talking alarm with cute messages - "wake up lovebirds" is the latest one that made me laugh.

He has kept me calm during moments of panic about preparing for my overseas trip - sorting out my tech stuff, packing my medical case securely and giving me a hug when it became overwhelming.

We saw some beautiful scenery on our Valentine's trip away - driving for the pleasure of taking in the views, winding the windows down to inhale the sea air. On one stretch of the road, a lot of cars were stopped and tourists were out of the cars looking up at the trees. A young koala was putting on a show - swinging from the branches and posing for the camera. We watched in awe - I've only seen koalas at the zoo. It was so good to share this moment together. He hugged me as we gazed up at the tree, watching the koala play.

A couple of weekends ago we had an afternoon to spare and so we went for a leisurely shop at Chadstone. He picked out (and paid for!) the most perfect dress for me - which confirmed how much he knows my style.

As I wrote previously, food is love. I've been sick recently and he took care of me - ensuring I got enough rest and was nourished with good food. One Sunday afternoon, I went to bed while he handrolled homemade pasta and cooked it with bacon, parsley and cheese. It was amazing. Definitely one of the best homemade pasta dishes I've eaten. He was so proud!

When we first got together he said he couldn't cook. I've helped to teach him to cook. Now some of my favourite memories are of us cooking - of him having the confidence to take the lead in the kitchen. He now gets so excited about food, planning meals and asking when we can bake bread together. I love putting some music on, having a drink and seeing what we can create together.

On a deeper level, it's the way he's come to understand my skin that I cherish. He takes time to learn - asking questions about what it means for me to feel pain. He takes care to touch me gently, adjusting his hug when I'm very sore. I can't believe I've found this man who takes such good care of me. If I could revisit any memory it would be the time he told me just how committed he is to living with me and all my skin. It was after a difficult night that didn't get below 30 degrees and we were both so frustrated at how my body would just not cool down (Ichthyosis means the body has difficulty regulating its temperature). I tried lying on cooling gel mats but they felt like a hospital bed. The next day he went out to see a movie to give me some space - and came back with a promise ring. He told me that it is a symbol of his commitment to me and that he will love me no matter how hot my body gets. It was a beautiful moment.

We've made so many good memories already - blogging is definitely a great way to record them. Sometimes, after we have laughed until our tummies hurt, I write down a conversation to reflect on later, to renew these memories. As we start to plan our wedding day and the rest of our lives together, I'm excited for the memories we will make.

What's in it for you?

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19 June 2014

I'm pretty used to intrusive questions. Used to them but tired of them. Something I didn't foresee upon getting engaged is that my life is now open to a whole new set of intrusive questions. Some questions are so personal they should only be asked in a doctors surgery. They're the nosey questions and comments about my relationship. And it seems I'm not alone.

I want to state up front that these nosey questions aren't the norm. We are usually met with such lovely congratulations and excitement - but I'm surprised at these occasional (becoming quite frequent) questions.

The number one thing that is commented on is my ring. I love showing it off to my friends, and on social media - not in a braggy way, but in an I'm so excited I'm getting married way! And also because over the holiday I had three manicures.

And it is beautiful.

When I meet a new person, I'm not going to flash my ring. But it has caught people's attention, or they've asked to see it. And their reactions are often about money, or calculating the money by asking about the carats.

"How much was that diamond?!", they exclaim.

"I bet your ring cost a few months' salary."

And the one asked by a venue consultant, perhaps indicating that we could afford that venue: "He must be doing alright for himself, he's a keeper."

Ugh. I am not marrying my love for his money. And a sparkly ring doesn't mean we can afford a wedding venue.

Money seems to be a common discussion point directed at engaged couples. Monique told me "My husband and I had a lot of people ask how much things cost for the wedding. Some of it was from other engaged couples who were wanting to gauge how much things cost/what was reasonable, others were people being nosey. We had people ask whether we were in debt or if we got a loan for the wedding (the answer to both is no). We've had a few people ask when we'll be having children because we are a pretty clucky couple but because we are still pretty young, we don't get many serious questions. While for the most part we're pretty open, people can push the boundaries with the questions."

I've not had many baby questions, but many newly married females I've spoken to online said they've been pestered about when they're having babies. A lovely reader, Trish, made me laugh with this comment: "Being 47 and 50, with 3 20something kids between us, only one person was silly enough to ask us if we didn't want "one of our own?"!!!" Oh the cheek!

I imagine it must be awful to have to discuss baby plans when you're unable to fall pregnant. My good friend Debra said "I was asked a lot about having babies etc .... They felt bad when I said could not have them - I know that was a bit mean - but it did stop the conversation going places I did not want to go - & it was truth also!!"

I spent a good 15 minutes discussing babies the other night - only this wasn't discussing when and how many kids we will have, but whether we will need genetic testing. Over dinner - with friends and people I don't know well. I've written about my thoughts on genetic testing here, so you could say I'm quite open about my thoughts. And my geneticist and dermatologist have asked me about it when I announced the engagement. But discussing it in person with someone I barely knew felt weird. It felt like I had to have all my decisions ready, and prepare to defend myself if my beliefs didn't align with theirs. Fortunately everyone at the table agreed with my thoughts, but this was a lot of personal detail to share over dinner. I have talked with Adam about the genetic aspects of Ichthyosis, and the possibility of passing the condition on, but I am sure that the conversation was uncomfortable for him because until he met me, he didn't think planning children could be so complex.

The next night over a drink with a friend at a disability event, I was discussing the surprised reactions to my engagement by people who don't really know me. Expectations and assumptions around my skin condition and appearance, I guess. I told my friend that I notice some people are obviously surprised. While they smile their eyes are looking elsewhere or their voice trails off. My friend and I discussed how it's weird to admit to recognising such reactions, and some people may think that we are overreacting and being paranoid. Then my friend and I agreed that people with disabilities are perceptive. Anyway... My Mum says she notices people's surprise too. I've had someone ask whether Adam has a skin condition too - complete with waving arm movements around the face. That's the universal symbol for "I'm awkward about talking about your red face."

Adam and I haven't been together for very long. But it's right. So right. I am excited about spending my life with him. I've had a couple of "isn't it too soon?" questions. I have even had someone telling me that my happiness is making them sad because they feel they can't have the same happiness." SO inappropriate.

My friend Dani, who is around my age and recently married for the second time told me, "Being widowed and having 2 children people had aalllllll the questions - how much was your ring, will you wear white, will you have a proper wedding (I'm still unsure what that meant), will you take his name, will you change the kids name, don't ask for gifts / wishing well ...now we're married we get the 'why won't you have children?' dani you 'owe' it to scott ... now we just ignore people ... it's OUR version of happiness so we only owe ourselves answers."

It's to be expected but some people have asked me about wedding specifics - have we set a date?, where will it be?, can you invite me/my relative?. And people already want to know about what my wedding dress will look like! Of course, I'm keeping it a secret until the big day! Fortunately I've not had much unsolicited advice - just really useful advice about wedding venues and lovely offers from celebrants and photographers. But Debra also told me "I was a 'matured age bride' - married for the first time at age 40 and some people felt they should tell me what I did and did not want for my wedding. I can tell you at 40 - I knew exactly what I wanted!!!!" Gosh!

I asked whether these questions are limited to the brides-to-be, or do grooms-to-be get them too? Melissa said "it’s an everyone thing. When you go through a common rite of passage, every fucker has an opinion."

I asked Adam his opinion on these questions. Like me, he thinks people are making a statement on our wealth, and the questions are a bit too personal. "I wouldn't ask anyone else the questions Carly and I have been asked", he said.

While we are truly appreciative of the good wishes and good intentions with nosey questions attached, the level of personal information I've being asked about my relationship and upcoming wedding is confronting. I know there will be more to come, but please, can people just be happy for our love without asking about finances and wombs? We are happy and love each other and that's all that matters.

I guess I count myself lucky that I haven't been asked "Are you sure he's the right one?" like Clairzilla told me she was asked. How rude!

What personal questions have you been asked about your wedding? How have you responded?

Edit:

I'd like to note that these questions about the engagement that I receive aren't as upsetting as the ones about my skin. It's given me some perspective!

Also, my friend Hayley married her wife Shani last year. While she isn't upset about the comments, what people think is right to ask her and her wife is shocking. She wrote the following:

"Then you get into the questions of same sex marriage.. Or should I put it more 'legally'? Commitment ceremony.

"Are you going to wear a dress?" or "Who's going to wear the dress?" Aka. "Whos the man in the relationship?"

"Will you both walk down the aisle?"

"Why not wait till it's legal?"

"What last names will you have?"

I think everyone who attended was quite surprised that we went the whole sha-bang minus the official marriage certificate and white dress.

The question we never get is about kids though... Everyone, even our parents assume we can't and won't have children.

The questions didn't bother me too much though. Even a couple of weeks ago, my boss asked just casually in jest. "So who's the man in your relationship?"

To which I always reply in quote from Ellen - "That's like asking with chopstick is the knife, and which is the fork."

17 June 2014

You may remember in July last year I was harassed by a taxi driver - he said the skin and cream on my face would ruin his car.

I wrote my complaint on my blog, and formally too. I took this case to the Human Rights Commission, the Victorian Taxi Commission and 13Cabs.

One of the outcomes reached in mediation and meetings with all three organisations was to develop better training for taxi drivers - to teach them that disabilities may not be so obvious, and to ask them to treat each customer with respect and patience, regardless of disability.

I'm pleased to share a video that I helped to make (also featuring my friends Kathryn Beaton and Jax Jacki Brown).

16 June 2014

I spoke to a group of 8-12 year old children about diversity when I was in Scotland. The friends I stayed with have a primary school aged son, and they suggested to the principal that I talk to the class. I stayed in a tiny town in Ardrishaig, about 2.5 hours drive from Glasgow. The school was tiny too.

It was wonderful and I'm so hopeful for the future.

I opened up the talk with a question about whether any of them know people who look different. Half of the class raised their hands - saying they've got family members and friends who have a range of disabilities, and some children's parents worked in disability care.

The class is doing a module on diversity - studying Scottish discrimination law and inclusion rules, and creating an accessible sporting venue. So cool!

The best statement from a child was "You should be someone's friend no matter what they look like."

I got some very intelligent (and funny) questions including:

"If it's too hot for you to cope in Australia, why don't you move elsewhere?"

"What's the racism like in Australia?"

"Why are people still prejudice when it's illegal?"

"My mother uses machines to help her with her MS. Do you need to use any machines to help your skin?"

And my favourite: "Do you speak Australian?"

It was one of my favourite moments of my international trip.

Thanks so much Peter, Lyn and Cameron, and to the staff and students at the primary school in beautiful Adrishaig!

12 June 2014

I need a little reminding of the happiest place on earth. I want to relive the fun!

When I was in Paris I went to Disneyland! It's about 30 minutes by train from National Station, and entry is around €75. I only stayed for three hours and didn't go on many rides, but gosh I enjoyed myself.

I went at the end of April, which was themed for Spring Fling. I loved the parades - they were the highlight of my visit. The costumes and dances and characters - my oh my! I don't know if you can see the videos here but you can do on Instagram.

The colours are so bright - brighter than anything I've seen in real life. It's beautiful - especially the gardens. I couldn't believe the vibrancy of the flowers and the detail of the topiaries.

And I bought myself some Minnie Mouse ears which I proudly wore on my train trip back to Paris.

10 June 2014

I occasionally read blog posts where the blogger is apologising to their readers for either not blogging for a while or for taking a new direction. I don't think there's any need to apologise. It's your space, for your own pace, your own race. That's the beauty of a blog - it can be anything you want it to be.

You don't have to blog every day or even every week. You can blog as much or as little as your time affords. When you don't want to blog because you're tired, you've got stuff happening in your life, you can take time out. If you really want to commit to producing a post regularly, batch write or keep some posts in draft form so you have some up your sleeve.

And you can take your blog into a new direction. Think of where you were when you started out and where your blog is today. Are you the same person you were when you wrote the first post? Probably not.

When I started out in this space, my blog was a mish-mash of posts about life events, a diary I guess. It detailed what I'd been doing. And then I became focused, writing for the love and development of writing, and concentrating mostly on what it's like to look different. And my writing has improved too. My blog is far away from that first post. Who would have thought I'd ever be writing about planning a wedding now!

As your interests change or grow, and your writing voice develops, your blog might do too. You might start off having no children and then becoming a parent blogger. Or you may choose to reveal less of your children's lives online. Your job may require you to curtail the amount of information you reveal about yourself, or you may go from blogging under a pseudonym to revealing your real name. If you want to take your blog from an online diary to social commentary, do it! You don't have to give all of yourself either. Embrace that change!

I think the only thing bloggers owe their readers is respect. And my Twitter friends agree.

Respect when it comes to checking the spelling and grammar, making sure the blog is easy and a pleasure to read.

Respect when it comes to the comment space - turn off captcha to show respect to loyal readers and moderate comments for spam (captcha makes me not want to comment on blogs). And open up anonymous comments - I find them so rich because anonymous readers are willing to open up about their own experiences and beliefs. Sure there may be a few hateful anon comments, but the good outweigh the bad tenfold.

Respect when it comes to sponsored posts. Disclose up front if you were paid to write about a product, given a product or have included affiliate links. It's so hard to tell these days what is a gifted product or what a blogger has paid for. I'd like to know the blogger has been paid in some form before I read the post.

And respect when it comes to thanking readers for reading commenting and sharing our blog posts.

Life is a journey and so is your blog.

It's your blog, do what you want, unapologetically. It can be anything you want it to be.

What do you think bloggers owe their readers?

I recently wrote pieces for Problogger and Kidspot that are relevant to this and may be useful. Problogger's post is about how success doesn't have to be the number of visits to your blog; and Kidspot's post is about setting boundaries as a blogger.

06 June 2014

One of the things I noticed during Ichthyosis Awareness Month, and also when staying with friends affected by Ichthyosis, is the amount of (and differing) time it take to care for the skin. There is a lot involved, and often a lot of stuff to carry. I especially noticed DeDe's commitment to caring for Evan - it's a big job. I thought back to my parents' experience with me, and I also received a question on my Facebook page about self care.

Denise asked:

"how old were you when you could look after your own skin?"

Great question Denise! For a long time it was my parents (mostly my Mum) who cared for my skin. They bathed me, washed my face, put cream on my body, combed my scalp, did my hair. This really made me comfortable. But it was quite time consuming for my parents, especially when they worked full time, kept house and garden, had pets and cooked.

I'd have nightly baths and my face was washed when I woke up in the morning. Mum washed my face with plain warm water and a facewasher (cloth). She would add either salt and olive oil, or bath wash to my bath. (Now I still put salt and oil in the bath, and occasionally have a bleach bath or MooGoo bubbles, but it is rare I have a bath as an adult. It's usually for treatment when I'm sore, not enjoyment.)

I had baths for many years - I'd rarely have a shower because I hated getting the water and soap in my eyes. But when I switched to showers, my life changed! It meant I could wash my whole body and feel really clean. I much prefer showers to baths now. On primary school camps I remember having a shower with my Mum so she could help me wash.

I reckon I was able to have night baths on my own when I was about 10, but Mum would still wash my face in the morning until I was about 13 or 14. It was really hard to wash my face in the morning - getting the dry skin off is hard as the skin is not pliable. It was especially hard when I'd scratched my face overnight and my face was bloody. It was so sore.

I was 13 or 14 when I started to have a shower, putting cream on prior, and the steam from the hot water would help to remove it easier. This is my morning routine now - get up, put cream on my face, have a shower, put cream on. I have a shower at the end of the day too - mostly at 6.15 as I find the cream soaks into my skin better before bed. I hate being in bed with really oily skin.

I used to use sorbolene cream but it left my face too dry, and very white, so I was prescribed a paraffin mix age nine or so. I think I was putting cream on my body on my own from about 8. I don't remember applying it myself at primary school - I guess my skin just went dry. Now I hear kids with Ichthyosis have aides who do help them, but this didn't happen when I was at school, and I was just too embarrassed to do it myself.

Every night and on Saturday mornings until I was about 16, Mum would sit down on the floor and I would lie on her lap. She would comb the scale out of my hair and remove the skin from my ears after a bath. This time was not only medically beneficial, but we debriefed after my day at school. We would make up stories together and I would also tell her if things were good or bad at school. My scalp is always cold after it's combed free of skin, and if we went out on a cold Saturday morning, my scalp would be so cold. Mum would get annoyed at me for complaining - but she didn't understand how much heat I lost then. I guess I wasn't able to articulate it properly. Again, my life has changed since I could explain how I felt. (I will let you in on a secret - when I go home I still ask her to comb my scalp because it feels good!)

Mum learnt to do wet dressings at home. The nurses and her taught me too. This meant fewer hospital stays. I now do salt dressings at home when I am sore - and I even did them in Paris with some posh French salt, a saucepan of water and some chux cloths.

The turning point was when I mastered my self care and knew how much pressure to apply to my face and body, took as long as I wanted in the bath and shower, and applied my cream through the day. It made me feel more comfortable. I make sure my face and body are smooth of flaky skin. I don't scrub, I just use a facewasher and plain water to wash my face in the shower, and the same facewasher and body wash to wash my body, and then dry myself off and put cream on. Taking the time to do this makes me feel and look better. I can move easier and don't dry out through the day. That photo above was taken in New York. I had more time to get ready because I was on holidays and it was cool so my face was clearer. There's a little lipstick on my lips, and an Instagram filter, but I was pleased with how smooth and clear my skin was that day.

My self care as an adult is second nature, and while I'm in a good routine now, I can afford to be flexible if I have to stay late at work or go out late at night. Sometimes I get ready for a big event really early so I will be comfortable, my cream will soak in and my face will be paler.

I don't like changing my routine too much - especially the cream I used. I tried Aquaphor overseas and it just didn't adhere as well as my own mix of paraffin.

You know, that's maybe the first time I've admitted to my self care routine as a child and teen because I was always embarrassed over the amount of time it took and the lack of independence I perceived to have. What other kid's mother was washing their face in the morning?

But now my shower cream routine can be as quick as 20 minutes total!! I have got it down from an hour to about 30 minutes for a comfortable wash and cream. I've even been using makeup now - a little lipstick and some nailpolish. It really is amazing what a good routine of self care can do.

(The products I use for my skin can be found here and here. Please talk to your dermatologist before trying them. Note that some of the products are only available in Australia but you may be able to get equivalent in your country.)

Wonder is written by RJ Palacio and I've devoured it in a day. (There may be spoilers in this, so read on with that in mind.)

Wonder is a fictional children's book about August (Auggie) Pullman, a young boy born with a facial difference. He's got a genetic condition which affects his facial structure and his hearing. RJ Palacio was inspired to write this book after an encounter she had with her sons and a little girl with a visible difference. As a reader with a visible difference, I will say that it's very well researched. It could well be an account from an actual person.

We never know what Auggie looks like but we get an idea from how he's treated.

Wonder documents his first year in mainstream school - the challenges of making new friends and fitting in. The descriptions of being a primary school student who looks different brought back many memories for me - it's interesting reading it from a young character's perspective when I've experienced similar. Auggie is teased, excluded (some of the other students invented a game called The Plague, where they believe if they touch Auggie they'll catch something), and physically bullied. He has a few genuine close friends but it takes a while to feel accepted.

Like when I read Robert Hoge's Ugly, I felt such great empathy to the point of tears and elation when reading about facial difference.

The things that I identified with the most were:

the way kids (and even young adults)think it's uncool to hang out with people who look different.

the impact a visible difference has on those who love us.

that someone else's appearance is a point of conversation. All the characters talked about Auggie's appearance and they were asked about it by others too.

the good people outweigh the nasty people thousandfold.

the way Auggie was adored by his parents. They only ever wanted the best for him and showed him so much love. Just like mine do.

I also realised just how many interactions I've had (and I'm sure my parents and teachers and perhaps managers have had) that have been prefaced with an explanation of my appearance.

Wonder is from a number of characters' perspectives - the other characters all talk about the impact of being around someone with a visible difference. Their honesty made me wonder whether I've ever been a burden to be around. I thought back to a time where a group photo was organised for a farewell. Everybody was called for the photo except me. It may have been an innocent oversight but I genuinely worried that they had excluded me because they didn't want me in the photo, that my face draw questions just like in person.

Auggie (and the other characters) observes the way people react when they first meet him. He's gotten used to it. And he has had to mentally prepare for meeting new people. There's the uncomfortable silence, the focus anywhere but his face, the open questions, the rude shocked reactions and the fear. It's the fearful reactions towards my face that sadden me the most - people gasping, children hiding their faces and yelling that they don't want to look at me. I hate it. I wish the attention could be diverted, because when a child is vocal about not wanting to look at me, the people around us stare at me.

There's a paragraph from Justin, the boyfriend of Auggie's sister Olivia:

"The universe was was not kind to Auggie Pullman. What did that little kid ever do to deserve his sentence?...So doesn't that make the universe a giant lottery then? You purchase a ticket when you're born. And it's all just random whether you get a good ticket or bad ticket. It's all just luck."

The sentence that Auggie has - being treated cruelly because of his appearance for his whole life - made me think about how society places importance on the physical appearance and that outsiders cope with an individual's visible difference worse than the individual. There seems to be so much discomfort, avoidance and exclusion, perhaps because of the sense of value outsiders place on their own appearances. Even the students' parents were uncomfortable by Auggie's appearance.

After Auggie is physically attacked by a group of older students, he asks his Mum:

"Am I always going to have to worry about jerks like that? Like when I grow up, is it always young to be like this?"

His Mum took a while to answer. When she did. She said there will always be jerks in the world but she whole-heartedly believes there are more good people in the world who will look out for and stand up for Auggie. As Auggie (and I) experienced, there is a pack mentality with bullying, there is also fortunately a pack mentality for kindness.

Courtney recently read the book too, and she said the book made her fear for Brenna's future. In a comment, I said to her don't be too disheartened for the future - especially when this is fiction and you've connected with so many real stories of people with Ichthyosis. Life will be difficult but it will be ok :)

Friends have told me how wonderful they thought Wonder is. One friend said it's on her son's curriculum. That Wonder is getting adults and children talking about visible difference is a great thing. It inspires empathy and kindness and gives a really accurate account of what it's like to live with a visible difference. There are some profound precepts in the book - showing how broadly young people think.

I would have loved Wonder to have been on the school library shelves when I was little. There was no literary role model with a visible difference when I was at school. Kids are very lucky to have Auggie now.

Rick gave me this book in confidence that I'd pass it onto another friend. I sure will. Wonder shares such an important message.

(RJ Palacio has since released a companion book, from the perspective of Julian, Auggie's main bully. It's available as an ebook on Amazon.)

02 June 2014

I never thought I'd try one on. I never thought I'd be a bride. I never thought love would be so good. Those nevers have now been banished to "of course I will". Because my path has changed.

I'm no longer single, no longer thinking I will be a spinster, and I no longer worry about the surprise people get when I say 'my fiancé'.

Mum and I took a walk in my neighbourhood. I knew there was a bridal store nearby, but I didn't know there was a sale. We hadn't planned on shopping that day, we were planning to look in Sydney Road today. By chance there was an appointment spot available. We went to get food and I bought a new bra because I always seem to wear the wrong bra when I try on clothes. Always too busty or not enough support.

I didn't think buying a wedding dress would be such a good experience! I had some silly worries. All the dresses looked impractical for me - sleeveless and boned. The ones with sleeves were quite austere. Would I fit into a smaller size? I still have my cheese chub from France. Would I be too cold trying the dresses on? All the brides-to-be posed in the middle of the floor - did I want them (and their mothers) seeing me too?

And then I met Louise, a woman who recognised me from the BUPA Health Activist awards last year. We got chatting about wedding plans - she's getting married back home in the UK, and her dress is amazing - and that calmed my nerves a bit.

I chose five dresses off the rack - I knew what style I wanted because I have been pinning since he put a ring on it. I also had a styling session with Megan Harding last week - she gave me advice about the shape of the dress, the ideal colour for my skin tone, and the neckline that would suit my bust.

I was incredibly excited. For an hour I felt like a princess, like I was in a rags to riches fairytale movie, like I was dreaming. As I looked at myself in the full length mirror, next to the other brides-to-be, I felt like I was someone else. The corsets shaped my waist, the satin skimmed my body. I will be a bride!

And then Mum came over with a dress she thought I'd like. It was not the style I'd been pinning. It was not the style I thought I'd ever choose, I hadn't even pinned a style like it. But when I put it on, it was the perfect one. My Mum knows me well.

I bought my wedding dress on Saturday. Mum and I had tears in our eyes. I choked up. We both never imagined this day. Who would have thought?

The dress is with my trusty bridesmaid now, because there's no place to hide it now Adam and I live together! Adam chose his suit yesterday (it's perfect too - he looks smokin'). We've checked out a venue already. We are in wedding mode and loving it! We're talking rings and name changes and playlists. Everything is secret squirrel until the big day, later next year. It's so exciting!

(Thank you for all the lovely wishes on my Facebook too and Twitter too. They're much appreciated.)

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The material on Tune into Radio Carly is copyright.The writing in this blog is by Carly Findlay unless otherwise stated.Most photos in this blog are by Carly Findlay unless otherwise stated.Please do not reproduce without permission from Carly Findlay.

This blog represents my personal opinions and experiences. It does not reflect those of my employers'.The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.